Dr. Echenberg answers questions on PGAD

Dr. Robert Echenberg
answers questions and offers his own comments on PGAD

What is
PGAD (Persistent Genital Arousal Disorder) and how many suffer it on a global
scale?

Although PGAD in women is uncommon
(no one really knows the actual incidence of this disorder), I want to make it
clear that PGAD is a sub-set of a much larger and quite prevalent group of
disorders that together are called “chronic pelvic pain” (CPP) or “Complex
Abdominal Pelvic Pain Syndrome” (CAPPS).

An estimated 30 million women in the
US alone are diagnosed with chronic pelvic pain. Worldwide, CPP is estimated to affect 15 to
20 percent of all women of reproductive age (teen to menopause). Many studies have shown that at least 90
percent of CPP/CAPPS sufferers have some level of pain with sexually related
activities – and my personal experience in treating women with CPP/CAPPS
corroborates these statistics.

What leads
women to develop CPP/CAPPS and its correlated disorder of Persistent Genital
Arousal Disorder or PGAD?

There are five main root issues that can result in a woman developing
PGAD. They include:

·Organ
and structural “triggers” of the urinary bladder, such as Painful Bladder Syndrome/Interstitial
Cystitis (PBS/IC);

·Gynecologic
disorders such as endometriosis, vulvodynia, and vestibulitis;

·Previous
accidental injuries, surgeries and childbirth; and

·Sports
injuries to the lower genital structures.

Is PGAD a
sexual disorder, or a pain disorder?

PGAD is a pain
disorder.PGAD
is NOT a sexual disorder.

Please
explain the symptoms of PGAD.

A neuropathy
is a condition that arises from traumas as well as dysfunctions of the body
that cause nerves to “fire off” when they should not. When nerves are hyper-sensitive and fire off
around the clitoris WITHOUT any sexual arousal or sexual thoughts, a woman
feels a variety of sensations that may be linked to pleasurable clitoral
(genital) stimulation but very quickly result in painful spasmodic contractions
of the pelvic floor muscles and ligaments that mimic spasmodic orgasmic
activity – except there is no pleasure and only a variety of different types of
pain, including burning, stabbing, cramping, and worse.

Millions of
women have various aspects of CPP/CAPPS, but only a small percentage of these
have PGAD. In my opinion, as I answered
above, all women with PGAD have pudendal neuralgia, and/or pelvic floor
dysfunction (chronically tight or “hypertonic” pelvic floor muscles), and most
of the women I have seen with PGAD also have combinations of bladder, bowel,
and/or reproductive organ dysfunctions.
An orgasmic response in these women with PGAD can occur independently of
sexual activity. When these patients try to be sexually active, this too
“triggers” off painful orgasmic responses.

Obviously
when this spontaneously occurs in the daily life of a woman at work or in
school or just when walking around, there is a tremendous embarrassment, shame,
and anxiety, which ultimately increases depression, anger, frustration, and
many other upsetting emotions.

This is all
made worse when she is ridiculed or embarrassed further by her family, friends,
and even doctors who do not understand any of these conditions and tell
patients “they are lucky to be able to have multiple orgasms.”

What causes
PGAD’s painful sexual response? Symptoms of PGAD generally tend to involve pain deep
within the pelvic floor muscles, and in and around the external genital
region. Flares can occur regularly for
periods of time, but patients can go months or even years without any of these
symptoms. When flaring, even the slightest
contact with clothing can hyper-stimulate the onset of painful spasmodic
responses.

Does PGAD
affect women of a specific age group?

In my
personal experience, I have seen patients varying in age from teens to
post-menopausal. The small amount of
literature about PGAD places it more commonly in the late reproductive years
(40s-50s).

Why do
some doctors think it is hyper-sexuality, and what is the key to diagnosing it
well?

In my
experience, most doctors have very little education in human sexuality or in
the rapidly evolving science of pain.
Both of these subjects are still not considered to be worthy of teaching
in any significant extent in our medical schools. PGAD is a confusing combination of symptoms
that the vast majority of doctors and others just do not understand.

Is PGAD
different than women who experience multiple orgasms?

YES, it is
very different. Perfectly normal,
healthy women have long been known to be able to achieve multiple orgasms with
pleasurable sexual activity. PGAD is not
related to normal pleasurable sexual response.
It is a neurologic disorder related to how chronic
pain is processed from the genital region to the brain.

Numbers of
women may go through incremental stages of “under the radar” bladder and
urethral sensitivities, along with early pudendal neuralgia symptoms, during
which time they may initially feel more “arousal” intensity during genuine
sexual activity. Later, their increased
sensitivity begins to turn to an annoyance or a discomfort, and this can eventually
lead to various descriptions of pain, burning, pressure, cramping, stabbing,
and worse.

At the same
time these women may discover that the pleasure sensation that has become more
irritating may correlate with urethral and/or bladder sensitivity. In addition, a large number of the women we
see with pain related to sexual activity often will tell us that they can
achieve arousal and even orgasmic response, but that they “pay for it” with
pain and cramping that may last for some days thereafter.

There may be
a fine line between pleasure and pain in many of these chronic pelvic pain
patients. If the pudendal nerve branches
innervating the entire vulva are more and more “dialed up” in their signaling
in association with a sensitive and tender urethra and bladder, then vaginal
intercourse may turn from pleasurable to painful.

Also, many
of our patients with painful bladder syndrome (PBS/IC) recognize that for years
they have experienced an immediate need to urinate during and following deeper
penetration intercourse. Many young
women are taught to “pee” following sex to avoid “UTIs”, so they train
themselves to empty their bladders before and after sexual relations. However
the research on PBS/IC clearly shows that a very high percentage of so-called
“UTIs” following sex are really flares of interstitial cystitis.

In addition,
I have begun to suspect that the so-called “G Spot” in the anterior vaginal
wall may indeed be the urethra itself.
The “G Spot” which has been talked about for years has never been
anatomically demonstrated. The female
urethra courses down the midline of the front half of the vagina and can become
significantly sensitive in a portion of IC/PBS patients. This urethral sensitivity might explain the
pain/pleasure continuum that we earlier mentioned associated with PGAD. Vaginal intercourse cannot avoid urethral
friction and may thus lead in these women to a state of arousal or
hyper-arousal.

Is there
any effective therapy for PGAD?

YES. PGAD is treated
like other peripheral neuropathies and chronic pelvic pain disorders. Find and treat all “triggers” which may be
pudendal neuralgia, IC/PBS and others, treat the pain adequately and always
find a qualified pelvic floor physical therapist for the inevitable pelvic
floor dysfunction or clenching.

There are medications such as anti-depressants, anti-seizure
medications, beta-blockers, and even peripheral nerve blocks on the pudendal
nerve that I have seen to be quite effective.
Also, because of the secondary anxiety and depression, it is very
helpful to utilize many different types of mind/body relaxation
techniques. The more we learn about
chronic pain in general, the better the research will be towards treating all
of the genital pain syndromes.

With what
other “sexual “disorders can PGAD be classified?

Because PGAD is a pain disorder, it influences all the other
sexual disorders. If a woman is
experiencing genital pain, it is obvious that she will also have diminished
sexual desire and arousal, and that she will be less and less interested in
allowing her body to be stimulated to any type of orgasmic response.

Is there
any similar disorder in men?

It has not been clear whether there is a similar disorder in
men. (Priapism is an uncommon disorder
of unwanted non-sexual penile erection that can be painful, but is largely
considered to be due to vascular abnormalities.
Also it is not analogous to PGAD because that would have to be the occurrence
of unwanted multiple ejaculations, and I do not know of such a disorder).

Nonetheless, in some of the male patients in our clinic who
also have IC/PBS, I have found at least several men who describe onsets of
urethral sensitivities that feel to them as if they might have an ejaculatory
response in totally non-sexual situations.
There definitely needs to be further investigations about the various
manifestations of pelvic and genital pain in men. We also receive descriptions
and requests for help on our website from other men who have been having very
similar symptoms and experiences

My own personal
sense with male patients is that PGAD manifests in the same combinations of
issues that women experience – that is - of Painful Bladder
Syndrome/Interstitial Cystitis, Pelvic Floor Dysfunction, and Pudendal
Neuralgia.

Should
PGAD be officially recognized in the next edition of the Diagnostic and
Statistical Manual of Mental Disorders?

Based on
what I have already stated, I think that PGAD should NOT be listed as a “mental
disorder” at all. PGAD certainly can
create mental and psychological problems in the individual with the problem,
but I strongly disagree that PGAD is “all in your head.”

In Summary:

The more I
work with women (and now some men) with variable degrees of PGAD, the more I am
coming to believe that this condition may be more common than we think. The combinations of painful bladder
syndrome/interstitial cystitis (PBS/IC) and genital pain disorders such as
vulvodynia, vulvar vestibulodynia, pudendal neuropathy, and even skin
conditions such as lichen simplex and lichen sclerosis, are very common in the
world of Chronic Pelvic, Genital, and Sexual Pain Disorders. I am recognizing that numbers of women may go
through incremental stages of “under the radar” bladder and urethral
sensitivities, along with early pudendal neuralgia symptoms, during which time
they may initially feel more “arousal” intensity starting with genuine sexual
activity. Later the increased
sensitivity begins to turn to an “annoyance”, “discomfort” and various
descriptions of pain, burning, pressure, cramping, stabbing, and worse.

At the same
time these women may discover that the pleasure sensation that has become more
irritating may be related to urethral and bladder sensitivity. A large number of the women we see with pain
related to sexual activity often will tell us that they can achieve arousal and
even orgasmic response, but then “pay for it” for hours or even days thereafter. They then start wondering why they are losing
their libido and start to avoid genital and sexual contact. We generally have to remind them that “why should their body want to go down that
path, when their unconscious mid-brain is shouting out at them saying that the
pleasurable arousal is commonly a signal for impending pain”.

I have begun to understand that there
may be a fine line between pleasure and pain in many of these chronic pelvic
pain patients. If the pudendal nerve branches innervating
the entire vulva are more and more “dialed up” in their signaling and this is
also associated with a sensitive and tender urethra and bladder, then vaginal
intercourse may turn from pleasurable and even orgasmic to pain and
aversion. For those women who can
achieve orgasmic response, only to “pay the price”, the physiology of spasmodic
contractions of an already fatigued and tender set of pelvic floor muscles
causes even more pain and cramping that may last for some days following
orgasm.

Also, many
of our patients with painful bladder syndrome (PBS/IC) recognize that for years
they have experienced an immediate need to urinate during and following deeper
penetration intercourse. Many young
women are taught to “pee” following sex to avoid “UTIs”, so they train
themselves to empty their bladders before and after sexual relations. However
the research on PBS/IC clearly shows that a very high percentage of so-called
“UTIs” following sex are really flares of the interstitial cystitis.

In the
course of spending at least 2-3 hours in our initial evaluation, (with now over
1000 chronic pelvic pain patients) and listening closely to their stories, I
have now started to realize that the current increasing recognition of women
with PGAD is not so surprising. Almost
all of the PGAD patients I am now seeing have combinations of all the symptoms
that I have just mentioned. There is, in
my strong opinion, direct relationships to pudendal neuralgia, both with
generalized vulvodynia and provoked vestibulodynia, as well as with the
urethral and bladder sensitivities associated with PBS/IC.

I also have
strongly suspected that the so-called “G Spot” in the anterior vaginal wall
that can lead to “vaginal orgasm” in a smaller percentage of women, may indeed
be the urethral sensitivity that early on in this evolving process may be the
vaginal arousal sensation that can lead to orgasmic response. This type of urethral sensitivity occurs in a
portion of PBS/IC patients. Only later in
the process do these sensations start to become painful and are avoided.

A young
woman and her husband described to us that for a period of time after a
previous pregnancy, she experienced a constant state of hyper-arousal and daily
felt the need to achieve orgasm to relieve this feeling. Her husband said he could not keep up with
her need for sexual activity. When I
asked her if it was like having an “itch that could not be relieved by
scratching”, she said that was exactly what it had felt like. Interestingly, following a subsequent
pregnancy, she became virtually totally unable to be aroused, lost all of her
libido, and then began having increasingly severe genital and deep pelvic pain
such that her entire vulva and vagina became a “no-touch zone” (as I refer to with many of our pelvic pain
patients). After a complete evaluation
she was found to have advanced pudendal neuralgia, vulvodynia, vulvar
vestibulodynia and long term PBS/IC.

For all of
these reasons I feel we should be paying a great deal more attention to these
unfortunate women with PGAD, as they seem to combine all of the main elements
of our “typical” chronic pelvic, genital and sexual pain patients. We will learn a great deal from them - and
appropriate clinical studies should be ongoing.

Robert J.
Echenberg, MD, FACOG

www.instituteforwomeninpain.org

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